Hi Rosy
It is really hard when you see your OH struggling with just day to day things. The mind is willing but the body is weak. I know that Mick used to get really frustrated when he needed help to get around but he did come to terms with the fact it was better to get every little bit of help he could to stay mobile.
We managed to get all sorts of little things to help from our district nurse. Mick had a special air pad for his chair it covered the full length of the chair right down to the recliner. It had a special pump to blow the inner bit up and the whole thing went into a navy fleece like cover. He loved it.
He also had two walking sticks sized for his 6'2" frame, these went everywhere with us even on good days. He used them to keep stable as he walked around our bungalow. We had a special air cushion for his bed it was really easy to set up although the nurse helped me initially. It just had to be pumped up every week or so. This and the seat cushion definitely prevented any sore spots from developing.
I bought a special grab handle which I put up in our walk in shower. It was about a tenner on Amazon and although it was only secured with suction cups, once fixed it was very secure. It just gave him a bit more confidence on his feet.
MST is a great drug for pain relief but Mick just found it made him sleepy and nauseous, he went onto Fentanyl patches instead they were so much easier, I am sure they helped to keep any pain to a minimum but with less side effects.
The lack of communication is really hard for you, so many things you would like to talk about or say, withdrawing is a very normal reaction when you know you are very ill. Its kind of hard to want to talk about anything I guess. In that respect I was incredibly fortunate. Mick chatted and joked with anyone and everyone, it took him a little while to truly open up about some things but he did. in some cases just in time, but at least he did. I suppose all you can do is offer as much encouragment to talk as you can, if and when he wants to talk then be there ready to listen.
I am really pleased you managed to evict a big elephant, it takes time to move one of these but every one you manage to move creates more light into the room.
I think of you every day and wish you all the very best
xx
Mo